Forum Discussion
Are you Caring for a Partner & Parents with Dementia/Alzheimers
Just wondering how many of us are actively caring for partners or parents with dementia/alzheimers?
If there are enough interested in doing so, we could ask the mods for our own group, to discuss the very real and personal issues that affect us, as their carers - and also how it is affecting/impacting our own recovery.
Tips & tricks on how to cope, would be really good - and just a secure, private area where we can vent or celebrate small wins. For those who are incontinent, for example, apparently there is an 'Incontinent Nurse' at most local health facilities, that can arrange an Incontinence Care Package that is subsidised (at little or no cost to you) but you need a GP referral to kick it off. 'Cos the cost of pads & pull-up pants costs a HEAP - 'specially when going thru nearly a pack a night! :( Hubby has recently become totally 24/7 incontinent. It is a life-changing event for both of us. I haven't had a full night's sleep without 4-5 interruptions for weeks now. He had an ultrasound on Friday & I should get the results tomorrow - and am hoping that something can be done to mitigate the severity of it all. However, from the questions the radiographer asked, I am a bit concerned it won't be 'good'. :(
It is such an insidious disease - I call it the 'living death' ..... you have to watch the person you love slowly change in both physical and mental abilities until they are almost unrecognisable. There are funny times too ..... I never know what I am going to find in what cupboard, anywhere in the house!! Stuff that should be in the fridge is in the cupboard & the cupboard things in the fridge ...... I found my electric toothbrush zipped in his Hearing Aid pack yesterday .....
SO .... Hubby (mid 80s) was diagnosed as Mod/Severe dementia 5 years ago (tho I'd been noticing silly decision making for some years prior to that) & is slowly getting worse. His twin brother is further along than him (he stayed with us for 4 days 2 weeks ago & it was a bit like herding cats!) Their older brother died from it in the USA some years ago, so it would appear to be genetic. His mother died when he was a baby & his father was only in his 60s when he died from excess of booze & smokes, so we don't know if they 'would have' developed it ....
I've recently signed him/us up to My Aged Care, but the bloke on the phone didn't think he needed assistance at this point in time (after asking him 3 simple questions, in particular that I would be speaking on his behalf, that just required 'yes' for an answer - and I was prompting him when to say it!) Bloody DIPSTICK!
I am very interested in hearing the highs & lows of your own dementia carer journey .... and maybe we'll be able to help each other. xx
If there are enough interested in doing so, we could ask the mods for our own group, to discuss the very real and personal issues that affect us, as their carers - and also how it is affecting/impacting our own recovery.
Tips & tricks on how to cope, would be really good - and just a secure, private area where we can vent or celebrate small wins. For those who are incontinent, for example, apparently there is an 'Incontinent Nurse' at most local health facilities, that can arrange an Incontinence Care Package that is subsidised (at little or no cost to you) but you need a GP referral to kick it off. 'Cos the cost of pads & pull-up pants costs a HEAP - 'specially when going thru nearly a pack a night! :( Hubby has recently become totally 24/7 incontinent. It is a life-changing event for both of us. I haven't had a full night's sleep without 4-5 interruptions for weeks now. He had an ultrasound on Friday & I should get the results tomorrow - and am hoping that something can be done to mitigate the severity of it all. However, from the questions the radiographer asked, I am a bit concerned it won't be 'good'. :(
It is such an insidious disease - I call it the 'living death' ..... you have to watch the person you love slowly change in both physical and mental abilities until they are almost unrecognisable. There are funny times too ..... I never know what I am going to find in what cupboard, anywhere in the house!! Stuff that should be in the fridge is in the cupboard & the cupboard things in the fridge ...... I found my electric toothbrush zipped in his Hearing Aid pack yesterday .....
SO .... Hubby (mid 80s) was diagnosed as Mod/Severe dementia 5 years ago (tho I'd been noticing silly decision making for some years prior to that) & is slowly getting worse. His twin brother is further along than him (he stayed with us for 4 days 2 weeks ago & it was a bit like herding cats!) Their older brother died from it in the USA some years ago, so it would appear to be genetic. His mother died when he was a baby & his father was only in his 60s when he died from excess of booze & smokes, so we don't know if they 'would have' developed it ....
I've recently signed him/us up to My Aged Care, but the bloke on the phone didn't think he needed assistance at this point in time (after asking him 3 simple questions, in particular that I would be speaking on his behalf, that just required 'yes' for an answer - and I was prompting him when to say it!) Bloody DIPSTICK!
I am very interested in hearing the highs & lows of your own dementia carer journey .... and maybe we'll be able to help each other. xx
143 Replies
- It is easy for elders to get dehydrated as many have lost the ability to know if they need liquids or not. Best to prompt them to have regular fluid intake, even if it means to place a glass of water in front of them and prompt them to drink.
- Many thanks for all that info, @Kiki_Dances60 - I will check them out!!
All the best for your Mum - as with BC, bloody dementia is an insidious disease. :( And just not fair to have stage 4 cancer thrown in on top if it as well (with my hubby.)
take care xx - Thank you @Kiki_Dances60
It is always good to have additional resources as the odd tip here and there can be simple but surprisingly useful.
I am sorry to hear about your Mum, it is a terrible disease and having to watch your Mum fade away must be distressing. She is lucky to have daughters who are able to put resources in to help her stay at home.
All the best - @arpie @June1952 I feel for you both dealing with the effects of this disease on your life partners. My heart goes out to you. I’m in awe of your patience and care.
my mum is 88 and has quite advanced vascular dementia. My sister and I were concerned about her eating habits a couple of years ago (we were discovering food in the fridge well past due by dates, mould, and her cupboards were so full they were impenetrable). She had a fall at the start of Melbourne’s first lockdown and ended up in hospital. No broken bones but severe pain and pneumonia! She returned to her home between lockdowns and we arranged 24/7 carers to keep her safe, fed and entertained. She doesn’t feel thirst, hot or cold, her short term memory is shot, she doesn’t remember she has a carer most days, but she enjoys a coffee and cake at the café and going to concerts (now she can), but her mobility is deteriorating.
I wanted to understand more about the disease and its progress and found a free online course called Understanding Dementia by Wicking Dementia - part of uni of Tasmania. It has helped. They are running another in July.Last year my sister came across a series of helpful videos on YouTube- Dementia Careblazers - looking after your loved one with dementia. Really practical, kind tips to help you in your interactions. - Oh boy, poor fella, that foot looks sore :'(
Fantastic news about his markers tho! Keep it up!
Caz x - @arpie it is very weird!! 😳. Your hubby’s foot is worse than mine, but what I have is similar. And yes, only hurts when I try to remove the dry parts and end up ripping flesh. Then it’s very painful. I also moisturise with most of the creams you mentioned.Keep up the good work! Your determination has got you to this point where he is now stable 👌🏻😊
- No pain with the foot, thank goodness @FLClover ... a real bonus. It is Just ugly and if he pulls the skin off, it can rip the flesh ... THEN it becomes painful, so I keep snipping the dry ‘tags’ off and putting ointment on to try and keep it moist ...
yes, ecstatic about the markers! Now we can play with the meds levels to maintain the markers and reduce any side effects - hopefully including the foot! Weird that it is just the one foot tho!
- The foot looks a bit painful @arpie 🙁, but fantastic news about the markers!!! 🥳🥳🥳
- Woohoo!! Hubby's markers are down again this week! One is even in the 'normal' range now!! The other one is still 100+ over - but has come down heaps over the last 3 treatments!! So our Onc (and us) are VERY happy!!
The foot was looking REALLY GOOD too .... but then it started peeling yet again (about the 3rd peel now over the last 3-4 months!) So we are playing around with the Capecitabine tablets to try & reduce the peeling, specially now that the markers are going down. He only took 1/2 the tablets last treatment (after the infusion) and the markers STILL went down, so that is good to know!
The good news is that he is not in pain or discomfort ..... even with the foot (only one of them!) looking like this. It went like this the first time he did chemo too back in 2010 - and the toenails never really recovered.
We've tried Moogoo, NS8 & NS21, Cetaphil, Sorbolene, and a couple more .... any suggestions??
most of the front of the foot is peeling now ...
It destroys the toenails too :( I clip off the dry scaly skin and then smother it in cream or ointment ....
He has another PET Scan at the end of the month .... to compare with the one in Jan. That will be very interesting! - Many thanks @Kattykit - I've been using Dermeze Treatment Ointment which is based on Vaseline with Parafin & a few other bits in it .... and then put socks on him to 'hold it in' .... I'm really enforcing the 'no bare feet' even around the house (let alone outside when he must wear shoes as well) as he is a diabetic too & has some neuropathy on his feet already so can't always 'feel' when he has a cut or an injury!
